Clinical enough?

[Alexandre]

Last week I've been to the neuro. This neurologist is specialized in neuromuscular diseases. He did a clincial on me - reflexes, strength, babinski, hoffman etc. He said my clinical was normal and because I'm twitching for over a year he's confident my twitches are BFS. He didn't want to do an EMG

Is a clinical by this neuro good enough?
I'm doubting because since a couple of days my right biceps is twitching 24/7. It also feels funny and my right hand has a crampy feeling in it.

Can I trust his diagnose?

[ktmj]

Most neuros don't want to put you through an EMG if there are no clinical signs of a disease process.

I bet more than half of EMG's performed are on the insistence of patients (I'm one of those that insisted).

Decide if you will be less anxious without one, or with one, and go from there.

[Blizna]

To be honest, it is not enough - ALS is characterized by both UMN and LMN damage. While UMN is detected by clinical exam by all of those check your neuro performs, LMN changes can be detected (objectively) by EMG. But in the beginning only UMN or LMN can be damaged - thats why competent neurologists - if they see fasciculations - order EMG. But of course clean clinical is very good sign.

[Alexandre]

The first time I went to the neuro they did on emg on me. It was normal. They only saw fasciculations.
But I was only twitching for a couple of weeks.
It's been more than a year since I went back to the neuro.

I have a couple of questions for you:
You think a clinical isn't enough at this stages?
What is Upper Motor Neuron and Lower Motor Neuron? What cannot be detected clinically?
Can it be that I twitch for more than a year and it's bulbar als? I have a hoarse voice for 2 weeks now.
Is constant biceps twitching alarming?
(after 14 months)

[Blizna]

I have not read the intro post - if you are twitching for such a long time, I think you really do not need EMG.
I have thought it was your first visit after your twitching started and you never had an EMG.
Upper motor neurons are in your brain, while lower are going down through the spinal card. EMG cannot detect any UMN abnormalities, that is why doctors do the clinical.

Do not worry, I have only responded to the question "Is clinical enough" without knowing you are twitching for year. I am twitching 2,5 years and its hopefully BFS - I had "terrible" times as anyone with BFS but still nothing that can be compared with truly ALS sufferers. I do not think twitching everywhere is alarming, I had hot spots in many places from face to foot. It will go away, you will see...and next day it appear on different place

[Alexandre]

I'm twitching for over 14 months (clean emg within 1st month)
At this moment non stop bicep twitching and hoarse voice? Can bulbar present with more than a year of twitching and than loss of speech?
I know constant leg twitching is for many BFSers but don't know about constant bicep twitching

[Blizna]

I was told by many specialists that the place really doesnt matter (except for some say the tongue twitching does matter, if its true fasciculation).

[Alexandre]

Is there a sort of time frame with fasciculations prior to weakness?
When you can be confident that they are benign?
I guess it's not logical to twitch all over for more than a year and than start with bulbar ?

[Blizna]

Your question about twitching before weakness is evergreen. I would give you anything if give me clear answer.
From one the biggest experts, dr. Carvalho - "even if ALS does present itself with fasciculations, several months is usually enough". Some people here have them quite long before dx, but mostly its really after noticing symptoms.
And mainly, not noticing symptoms doesnt mean you have not them. I think there is barely somebody who had clean EMG, clean clinical and later was really diagnosed with ALS (not speaking about bulbar).
Been there, believe me. I had troubles chewing, troubles swallowing. Your voice will get better, I am sure.

[Alexandre]

I asked the neuro about twitches before weakness because a friend mine knows a man who had 1.5 year of on and off twitching in his bicep and than weakness. He didn't go to his GP with his twitches, he just ignored it.
This got me wondering if their are a lot of people that ignore those twitches and go to the neuro when they experience weakness. So could it be possible that people have them for YEARS (and been caused by ALS) they go to the neuro because of weakness. The neuro said most people will go to their GP with those fascics.
I read cramps can precede weakness by years. And if cramps (and caused by ALS) can come years before weakness, why not the twitches?

I'm twitching in every place in my body. If this was caused by ALS I would think other signs would show up, right? If the disease is going on wouldn't it be strange that it takes this long for weakness?
But then I read Miss Lori has had a clean emg , 2 years of twitches and than other signs and I read a couple of stories from people that have been dx wrongfully with bfs (ALS later on)

I just want to know when I can put this think behind me. Because know I'm freaking out with every new kind of twitch like that non stop bicep and the hoarse voice
My neuro said he really thinks it's bfs but when I hear of false dx...

[Blizna]

Lori has ALS in her family...there are some studies proving that with familiar ALS, fasciculations before weakness occur more often. It was related to some kind of toxicity process iritating motor neurons but not causing (yet) them to die. I do not know about more people here who gets BFS and later turn out to ALS.
With cramps you are wrong - almost every detailed article mentiones that cramps often precedes even by years, but fasciculations very rarely.
There is one important thing about this thing - you will weakness when about 50% of is dead. So altough they do not feel weakness, there is already denervation which EMG would pick up.
Thoroughly done clean EMG (I was quite shocked since in US EMG are often done by technicians...thank God in Europe only specially trained neurologists is enabled to do EMG) done in at least 3 regions should give you 99% chance its not ALS.

[paleshia]

take your doctor's opinion about your diagnosis and have a party! Good golly, even if you have Als there is nothing you can do about it, so go have fun and if you ever get diagnosed, you will have plenty of opportunity to worry, cry, cope, survive this thing. don't waste a precious minute on this...live your life and take all this worry and channel it into something good!

[Alexandre]

Jen you are right but I think it's only human that we are anxious about are symptoms are related to an awful disease. But once again you are absolutely right but I find it incredible hard to get my mind of this.

[Alexandre]

blizna did you ever had a non stop twitch in the bicep?

[SandraD]

Hi Alexandra,

why don't you just insist upon another EMG and have it done by the specialist in neuromuscular diseases, not a local neurologist or a technician. if you have gone that long with twitching and other symptoms and still have a clean EMG, you probably don't have anything to worry about. by the way, have you been tested for Vitamin D deficiency? It can lead to twitching, cramps, bone pain and other symptoms, if it's bad enough.

Sandra